Building Support Systems for Women Living With HIV in the 1980s

Yeah. So that gave us the money to take the organization out of my home. And we were in a little room on DuPont Circle, just serving women. We had no furniture. We were sitting on the floor, doing support groups.

At that time, I was also on the Ryan White Planning Council, so I was able to really, really push for services to be family-centered, so that it includes women and their children. Some women are taking care of their mother or their father. So we need to make it where it's family-centered care, and not just for the person living with HIV.

So that's where my advocacy started -- to help to make funders change how they were funding. And it's now a full-fledged organization in the District of Columbia. We serve thousands and thousands of women -- and men; we test men. But we serve women every day through many, many programs: counseling and testing; policy and advocacy; case management; youth programs; support groups; and food pantries. We've grown from a staff of two to a staff of 20. And believe me, there's still a lot of work, and we can still use more staff.

We are branching out and hoping to do pregnancy prevention and screening, and domestic violence work, and those types of things. That's the goal for some of the programs that we are growing and adding on to the agency. So it's not just seen as an HIV organization.

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You said that when you were first diagnosed you thought you were the only woman and hid for a while because of the shame and the stigma. What factored into your being able to basically overcome that stigma and become an HIV advocate?

Well, I don't think we ever overcome the stigma, to be honest with you. There are still places that I'll probably say, "I don't want to talk. I don't want to go here. I don't want to go there." I know that sounds rather weird, but I still have my own little pockets of places I may not go to.

But getting me past that was really becoming an advocate. Now, remember, I live in Maryland. So coming to D.C. and being on the Ryan White Planning Council, and being in these little closed-in places, was OK for me. They were baby steps. I went there and I made these demands, and tried to get changes to happen that will serve women better.

In terms of women and disclosure, and breaking isolation and things like that, to be frank with you, in the beginning it probably was about ourselves and protecting our children. As you become more empowered and see that you can make a difference and that you have some strength, then you can do baby steps and get where you need to.

But in reality, some women never get there. And I always tell them that that is OK. Because we can't go around forcing people to speak out and be more out there. We have to understand that it is a process. It took me a while to get there. It's going to take other women longer periods, or shorter periods. Some people get tested and they come out loud and bold.

So I think we have to understand that, for women, disclosure is huge. It also includes violence. We don't talk about the intersection of violence and HIV, especially for women. A woman can get beaten because somebody finds out her HIV status, or because she discloses her status to a partner, or she may have become infected because of violence. Most of the women we serve here have experienced violence somewhere along their lifetime. So we have to be extra careful about the gender issues that come into play.

I want to switch gears a bit and talk about your life prior to being diagnosed with HIV. Where are you from? What was your upbringing like?

I'm originally from Guyana, South America, but I grew up in Brooklyn, N.Y. That's where I met my husband and that's where our first child was born. Then we moved here, because the place we were both working at relocated to the District of Columbia. So we moved here in, I think it was, '81 or '82. And here's where my other two children were born.

Is most of your family still in Guyana or here in the U.S.?

Most of my family is still in Guyana, but my immediate family is here: D.C., Jersey, Brooklyn. So, all of my siblings know; my dad passed, but my mom knows. I have other family in Brooklyn who don't.

When I first told my mom it was like, "OK, let's just keep it to ourselves. You don't tell anybody." And so that's what we do.

Comment by: Selenah
(South africa)
Fri., Feb. 8, 2013 at 3:47 pm EST
Hi there...you realy are such a strong woman...i wish everyone knew how far we can live and fight this disease.may God grant u more to live for.

Comment by: miriam n
(lilongwe/malawi)
Thu., Sep. 20, 2012 at 2:29 am EDT
I am happy for you patricia
I am also living with HIV
you are not alone,I am not alone,collective women
Keep well,eat good and avoid stress
I love you

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